Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Agony After Bowel Movement

MAXX

Recommended Posts

MAXX Newbie
MAXX
Posted

Hi, I feel real bad since 2 years and got diagnosed with Celiac since 3 months. Then I am on gluten free diet since 3 months. I felt better after 2 weeks for maybe one month of little up and down an suddenly I crashed. I'm now living the worse moments of my life. Each time I go for a bowel movement I know that I will have up to 4 hours to recovery from it. I lost all my energy, unbelievable abdominal pain, hard to walk or even move, driving my car is sometimes dangerous. Someone has the same problem after going to toilet?

Thanks to help me, because I can't live this way anymore. I would say that I am more sick since I run gluten free and my diet is really strict gluten and lactose free.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shopgirl Contributor
shopgirl
Posted

I think the obvious question is: have you seen a doctor about this?

ravenwoodglass Mentor
ravenwoodglass
Posted

What are you eating? It is best to go with whole unprocessed foods if your not already. Also be sure to check all your meds and supplements and take precautions to prevent cross contamination. As the other poster stated if you haven't talked to your doctor please do so ASAP.

MAXX Newbie
MAXX
Posted
  • Author

Yes I know about cross-contamination, I even switched brand of my toothpaste. I went again to hospital today for blood test and nothing is wrong. I hate that loss of vital energy. I have to take another appointment with my gastro specialist that told me last time that this was normal and that I only had to sleep after bowel movement huhuh. I'm so tired... I hope someone will be able to give me an advice to help me. All my vitamins/minerals supplements are gluten free and have my own toaster. On morning after BM I fell in pieces then sometimes (not all the time) in the afternoon I can get enough energy to walk a 5-10 kms (that I don't do). I talked to nurse, pharmaco, doctors, no one know what is wrong. I don't think that this is linked with celiac disease..

ravenwoodglass Mentor
ravenwoodglass
Posted

Has your GI done a colonscopy since this started? It might be a good idea if they haven't. Have you considered other intolerances? You may want to drop soy and dairy for a while and see if that helps. Are you female? If you are a visit with your OB/GYN might be a good idea.

shopgirl Contributor
shopgirl
Posted

The gastro told you it was normal to be in pain and have to go to sleep after a bowel movement? You need to find a new doctor. It's definitely not normal.

And I agree with raven, maybe try dropping a few other things and see if that improves. Or even try a stool softener or an osmotic like Miralax or magnesium.

MAXX Newbie
MAXX
Posted
  • Author

MAXX = male ;)

Yes they passed me a coloscopy and gastroscopy for the biopsy.

I dropped off lactose and nothing change, I will try to quit casein and switch for soy milk. and maybe quit soy a day, but one thing at a time if I want to see exactly what is wrong. Thank you for your answer, I will tell you in the next days what my GI thinks about that, I'm supposed to get an appointment with him.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MAXX Newbie
MAXX
Posted
  • Author

NO!, I can't see my GI before February 1st. My family doctor (sorry about my english) told me to take Imodium. I will give it a try. I don't have other choice for now.

ravenwoodglass Mentor
ravenwoodglass
Posted

NO!, I can't see my GI before February 1st. My family doctor (sorry about my english) told me to take Imodium. I will give it a try. I don't have other choice for now.

Are you having D? If your not don't take the Immodium. I would drop both casien and soy. Then if you are getting some relief after you have felt better for a couple weeks challenge them one at a time to see if one or both is the issue.

Are you in Europe? If you are in Europe are you eating stuff with Codex Wheat starch? In think that is considered gluten free over there so do make sure it isn't in anything that you are consuming.

If your pain is as severe as it sounds like it is you may want to consider having someone take you to the ER when you are experiencing it.

Barretts mom Newbie
Barretts mom
Posted

After reading your post I was very strongly reminded of problems that my son had after giving up gluten. He had a brief period of feeling well and then severe muscle pain, tightness and spasm in stomach and pelvic area. It was not diet related and none of his doctors had a clue either until he was referred to a physical therapist who found that the muscles in those areas had become very tight after years of gluten intolerance. He has been undergoing physical therapy and has had some relief. My suggestion to you would be to find a physical therapist and ask her about the possibility that this is a muscle problem. In particular ask her (the physical therapist) if by chance this could be pelvic floor problems. There is also a book out there (Healing Pelvic Pain) by Amy Stein who is a physical therapist in NYC and has actually written a book on Pelvic Floor Disorder that has wonderful exercises in it. Good luck to you. I hope this is helpful in resolving your problem.

Barretts mom Newbie
Barretts mom
Posted

Had another thought after posting the last reply, make sure that you get checked out by your doctor to see that you do not have an anal fissure. That too will give severe discomfort after a BM and usually lasts a couple of hours. Good luck

MAXX Newbie
MAXX
Posted
  • Author

I've stopped consuming dairy product and I feel so much better!! WOW what a big difference! hope that this will keep up this way! And I will ask about anal fissure and intestinal tightness. Thanks for all!! The milk was killing me! How could I know! Thank you again!

ravenwoodglass Mentor
ravenwoodglass
Posted

I've stopped consuming dairy product and I feel so much better!! WOW what a big difference! hope that this will keep up this way! And I will ask about anal fissure and intestinal tightness. Thanks for all!! The milk was killing me! How could I know! Thank you again!

Glad to hear your feeling better. You may want to check labels for casien as some dairy products are lactose free but not casien (milk protein) free. It might be a good idea to avoid both for a while.

Butter is very low in both and ghee, which is clarified butter, is both lactose and casien free, just in case you have problems finding a nondairy margarine that is casien free.

  • 3 weeks later...
MAXX Newbie
MAXX
Posted
  • Author

Here we go again, sick sick and SICK!!

3 times sick this month, that seems to become from the white straight microwave cooked potatoes!?!?

I went to toilet friday night and I lost all my vital energy and we are now sunday and this is not better!

That's just crazy, I don't know what to do, hope that "Dr. Fail" will help me better on tuesday..

MAXX Newbie
MAXX
Posted
  • Author

Wow Dr. Fail told me that temporary lactose intolerance is BS and is a myth.

He told me also that if I'm sick this is because I've changed my diet for a gluten-free one. WTF my body is in lack of gluten!?

He said, "I don't know you have the IBS syndrom take those pills and goodbye".

GRRR!

Pac Apprentice
Pac
Posted

The microwaved potatoes reminded me of something - was the microwave "gluten-free"? I get bad GI symptoms from air-borne gluten way more often then from eating cross-contaminated food or even gluten directly. I have no idea why, could be allergy reaction rather than intolerance/celiac.

As others mentioned, if you're in Europe, you could try avoiding deproteined wheat starch, at least until you get better. And maybe check other gluten-free food you eat as well. Just today I was checking list of tested products - at least half of gluten free bread and bread mixes, cookies etc. with wheat starch as one of the ingredients had between 20-60mg/kg of gluten. Two cake mixes that list wheat starch at the end of otherwise naturally gluten free ingredient list had almost 90mg/kg. :o One corn flour had 150mg/kg (not the only one cc-ed). Rice flour from that same company had 50mg/kg. (On the other side, Pilsner Urquell tests regularly under 10mg/kg, almost the same as the pricey "gluten-free" barley beers.)

Good luck!

Kimbalou Enthusiast
Kimbalou
Posted

Hi Maxx. I'm sorry to hear about your pain. I've had some of these problems after a BM too. Lomotil works well, you need a Dr's prescription for it. It's stronger than Immodium. It will make you sleepy, so you might only need half the regular dose. You might want to ask for this med. I'm not sure what's going on with you, but at least this med will help with the pain.

Kim

eatmeat4good Enthusiast
eatmeat4good
Posted

Hi Maxx,

Sorry you are in such pain.

Potato is in the nightshade family.

You may be intolerant of nightshades.

This includes all peppers, tomato, potato, tobacco, and eggplant.

Just thinking they may be contributing to your pain.

Sorry your Doc wasn't helpful.

Keep trying though.

Soy is another intolerance that sounds like it may be bothering you.

Good luck

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.